Growing Old With HIV

Growing Old With HIV, LIving with AIDS at 50, Living with AIDS in middle age, Holly St. LiferGrowing Old With HIV, LIving with AIDS at 50, Living with AIDS in middle age, Holly St. Lifer
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When Osvaldo Perdomo was diagnosed with full-blown AIDS in 2004, he was so certain he was going to die, he purchased cemetery property and added funeral expenses to his benefits package.  But after a complex medical protocol that included three and a half years of painful Fuzeon injections, he is alive.

The last ten years have been a process of starting over for the former Liz Claiborne executive, but not in a good way.  “There have been so many emotional and physical challenges. In the beginning I felt like a baby learning to walk. He falls, cries, then tries to get up again. That was me,” said Perdomo, 54, in August during an interview held at the Gay Men’s Health Crisis office in Manhattan, the healthcare and advocacy organization.

He looked the image of vigor, tan and slim in a white linen shirt and blue printed shorts, his gray hair shiny, his blue eyes clear. But shortness of breath, memory loss, lack of focus and energy, stomach problems and difficulty walking limit him throughout each day. “I work hard to try to accept my situation. I tell myself, I’m lucky to be here, things will get better. ” Perdomo is also being treated for depression and anxiety.

“I’m fortunate that I’m healthy but I’m always expecting the worst,” says 50 year-old Perry Halkitis. a psychology professor at NYU who was diagnosed with the virus in 1988 but by his own calculation has been HIV positive since 1981.  “I go to the doctor every six months and always get good results but it doesn’t matter. I get a cold, or a small scab and I think, that’s it, now I’m really going to die.”

As we approach the 40-year mark of the epidemic, most news accounts now call HIV a chronic, manageable disease.  According to the Centers for Disease Control and Prevention, 31 percent of people living with HIV nationwide are over the age of 50 and that figure is expected to increase to 50 percent by 2015.

This is the first generation to grow old with HIV. While some say they’re healthy, others are showing signs of premature aging such as bone loss, heart attacks, organ failure and arthritis. Cognitive loss is particularly prevalent.

“Aging causes increased inflammation and a weakening immune system and so does HIV, so these people are getting a double dose of both.  We’re finding those who went the longest without treatment have the more severe age-related symptoms,” says Antonio Urbina, MD, associate medical director of the recently renamed Spencer Cox Center for Health in New York City.

Cox was a leading AIDS activist who designed a drug trial for Ritonavir, an early protease inhibitor, that was approved in six months.  In January, at 44, he died after struggling with hospitalizations and likely depression. According to a New York Times article about his death, friends later found he’d gone off the antiviral medications he fought so indomitably to get approved.

Fifty-year-old Sean McKenna was diagnosed with HIV in 1992 after a bout with bronchitis convinced him to get tested, but he thinks he may have contracted the virus up to ten years earlier. By the time he went on the lifesaving antiretrovirals in 1996, his physical and cognitive health were irreparably compromised. The former Ford model and casting agent has lipodystrophy, a form of fat redistribution common to long-term HIV patients, arthritis, depression, anxiety, and neuropathy in his hands and feet.

In 2002, the NIH launched a large-scale study called CHARTER (central-nervous system HIV antiretroviral therapy-effects research) to study the effects of protease inhibitors on the brains of HIV-positive people.  The results found 52 percent of the participants had some type of cognitive impairment. Most were only mild or moderate dementias – but even those can hinder one’s ability to function optimally.

“I was a numbers guy responsible for profitability and gross margins,” says Perdomo. “I found I couldn’t keep up with the fast pace and pressure I once thrived on. I went from working 50 hours a week to none. I feel less than before and ashamed.”

Why do some age well and others don’t? “That’s the research I’d like to see done. The patients who are most connected tend to be the most resilient. They’re the ones that are thriving,” says Dr. Urbina.

A study conducted at the University of California found adults over 50 at risk for HIV were 80 percent less likely to be tested than those in their twenties. Genia Graham, a self-described “white, straight, mother of three, the monogamous good girl,” was tested for every disease but AIDS because she didn’t fit the profile.  She had tumors, joint pain, lost 125 pounds, her hair, teeth and fingernails.  “The doctors told me whatever was killing me was in my head,” says the 50 year-old from Lewiston, Maine.  When PCP pneumonia, the type associated with AIDS, landed her in the emergency room, a doctor there finally tested her.

What got her through? She is convinced the support of her children and grandchildren were as critical to her recovery as her medication. “They gave me strength when I didn’t want to fight. I would not have survived had I been alone in this.”

Graham is luckier than many;  feelings of isolation, devastating loss, and not fitting in anywhere are rampant – which is why living with HIV has been compared to surviving military combat. Both groups brace for death, only to find that they’ve lived. Both watch scores of friends and loved ones die around them and find that it’s often hard to adjust to normal life. “Losing so many good people … like with any war you wonder why you came home,” says AIDS activist Peter Staley in the closing moments of the Oscar-nominated documentary, Surviving a Plague.

Unlike other chronic diseases, HIV’s stigma adds to the potential for isolation and depression. “People have talked down to me when they heard about my HIV status.  I have a master’s degree yet some think it’s okay to be judgmental and condescending as if I am less than they are,” says 55 year-old Stephanie V. who describes her health as “okay.” Taking her medication, staying active and regularly attending her support groups at the GMHC are what keep her persevering. She says she is grateful to be alive.

“In the 1990s I felt enveloped and loved by the gay community. But once the cocktail came out that saved everybody, the focus turned to marriage equality. Now I feel like there’s no support, but we’re still fighting for our lives,” says McKenna.

Treating the medical issues is no longer the main challenge.  “It’s the emotional and psychological aspects of the disease these people need the most help with. All of us, but particularly health providers, need to be more respectful of the struggle this group has endured. They’ve lived through the decimation of so many of their friends and that must be recognized,” says Dr. Urbina.

As part of that effort Halkitis wrote the book, The AIDS Generation: Stories of Survival and Resilience (Book link:, which goes on sale in November and profiles 15 men, including Sean McKenna. “These men lived through the darkest hours of the epidemic and still they keep going. I wanted to make sure their stories were told and remembered,” says Halkitis.

The guilt of the survivors Staley alludes to is often combined with the amazement of their miraculous recoveries, and the fear that death could still come at any moment.  “I can’t believe I made it to 39. And then to 50. Now I’ve got to make it to 65,” says McKenna. “I owe it to all the friends I’ve lost to live as long as I can.”

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